Abstract
The aim of this study is to systematically review practitioners’ practices and attitudes in regards to communicating a diagnosis of dementia. A systematic search was conducted of Scopus, Web of Science and PubMed for English language original empirical papers. A sequential explanatory mixed studies analysis approach was used. Twenty-five quantitative descriptive, two intervention, six mixed methods descriptive and 21 qualitative studies were included. Pooled analysis showed that 34% of GPs and 48% of specialists usually/routinely tell the person with dementia their diagnosis, and 89% of GPs and 97% specialists usually/routinely tell the family the diagnosis. Euphemistic terms such as ‘memory problems’ are more often used to describe dementia than medical terms. Practitioners’ decision to diagnose and communicate the diagnosis of dementia are influenced by (a) their own beliefs regarding dementia and treatment efficacy and their confidence in diagnosis and communication; (b) patient circumstances including level of awareness, level of severity and family support; (c) the health and social care system including access to specialist and diagnostic services, reimbursement for diagnosis/management and availability of services and (d) cultural norms in relation to dementia including stigma, labels, and common clinical practice. The diagnosis and communication of diagnosis of dementia are intertwined processes and should be concurrently addressed in interventions. Multicomponent approaches to address these practices could include guideline development, practitioner education, anti-stigma public health campaigns, offering post-diagnosis treatments and support and sufficient reimbursement for practitioners for time spent managing dementia.
Introduction
Almost two-thirds (63.7%, 95% CI: 54.8% to 71.8%) of dementia cases in the community are not diagnosed (Lang et al., 2017). The physician or team that makes the diagnosis has the responsibility to communicate it, so we assume that the person making the diagnosis of dementia also communicates it. Primary care practitioners or general practitioners (GPs) play a central role in the diagnosis of dementia (Geldmacher & Kerwin, 2013); hence, most people with dementia are told their diagnosis by a primary care practitioner or GP. Recommendations suggest that when conveying a dementia diagnosis, practitioners use the term dementia (or sometimes more specifically Alzheimer’s disease or another cause of dementia) except when inappropriate because of cultural or other reasons, and actively counter nihilism and despair by focusing on the functional capabilities that remain and framing the challenge as achieving the best life possible (Grossberg et al., 2010). Guidelines also recommend that when giving the diagnosis the practitioner should address issues including remaining diagnostic uncertainty, treatment options, future plans, financial planning, assigning power of attorney, wills and ‘living wills’, driving privileges and the need for eventual driving cessation, available support services and that information should be provided in accessible verbal and written formats (Clinical Adaptation Committee, 2016; Fisk, Beattie, Donnelly, Byszewski, & Molnar, 2007). There appears to be a disconnect between guidelines for communicating a diagnosis of dementia and medical practice in the community (Carpenter & Dave, 2004).
Communicating the diagnosis can be thought of as truth-telling or honest communication about the condition and prognosis, as well as a willingness to explore and meet information needs (Hancock et al., 2007). We have purposely used the terms ‘communicating’ or ‘telling’ the diagnosis rather than the commonly used term ‘disclosing’ because disclosing implies sharing a secret, and we do not wish to imply that a diagnosis of dementia is a secret to be hidden or revealed.
GPs find communicating the diagnosis of dementia difficult (Karnieli-Miller, Werner, Aharon-Peretz, & Eidelman, 2007; Moore & Cahill, 2013; Phillips et al., 2012) and that managing dementia is more frustrating than rewarding (Liu, Lai, Dai, Ting, & Choi, 2013; Pathak & Montgomery, 2015). There is variability in how the diagnosis is communicated terms of who gives the diagnosis, who is told and what terms are used (Kissel & Carpenter, 2007; Moore & Cahill, 2013).
In the field of cancer, poor communication has detrimental impacts on patient decisions about treatment and unintended psychosocial consequences including heightened anxiety and depression, poor psychological adjustment, hopelessness and reduced quality of life (Thorne, Bultz, & Baile, 2005). The dementia literature fails to disentangle the impact of the symptoms of dementia from the way the diagnosis is communicated. However, people with dementia have written about how the post-diagnosis information had negative impacts on their view of themselves and the future (Swaffer, 2015). Our systematic review of experiences of people with early dementia found that diagnosis is a key point of disempowerment, with insufficient information provided about dementia, limited treatments and supports and ‘hope’ offered (Low, Swaffer, Mcgrath, & Brodaty, 2017).
Practitioner training in medical ethics stresses the principles of autonomy, justice, beneficence and non-maleficence. When communicating a diagnosis of dementia, practitioners must balance these principles (Whitehouse, 2000). Autonomy is supported when the person with dementia is told the diagnosis (as long as they want to know), by allowing them to plan care, seek other opinions, choose treatments and put their affairs in order. Deception about the diagnosis fails to respect patient’s autonomy as a self-determining, self-governing being (Tuckett, 2004). A systematic review found that the majority of people without cognitive impairment and memory clinic attendees of those with dementia wanted to be told if they had dementia (90.7% (95% CI: 83.8%–97.5%) and 84.8% (95% CI: 75.6%–94.0%) respectively) (van den Dungen et al., 2014). While memory clinic attendees may not be representative of older people, this suggests that many would want to know if they had dementia.
Common beneficent reasons for telling the diagnosis are to facilitate planning, because knowing would have psychological benefits for the person and/or their carer, to maximise treatment, to obtain a second opinion, because the person with dementia wants to know, so they can plan travel or a vacation (Bamford et al., 2004). However, practitioners may view telling the diagnosis as having negative (maleficent) repercussions, or that they are being beneficent by not telling or delaying. This relates to beliefs that that nothing can be done for dementia (Moore & Cahill, 2013), that giving the diagnosis will damage the patient–doctor relationship (Mason et al., 2016; Phillips et al., 2012), and that knowing the diagnosis will have negative psychological impacts on the patient (Moore & Cahill, 2013; Pathak & Montgomery, 2015).
The aim of this study is to systematically review research on practitioners’ practices and attitudes in regards to communicating a diagnosis of dementia. Specifically we are interested in (1) the proportion of practitioners who usually communicate the dementia diagnosis; (2) how the diagnosis is communicated and (3) factors that impact on whether the diagnosis is communicated.
Methods
A systematic search was undertaken (see Figure 1) in September 2016 of the databases Scopus, Web of Science and PubMed, no restrictions were set on publication date. Reference lists of included articles and relevant reviews were hand-searched.
Flow chart indicating inclusion of articles in the review.
Search terms were
dementia OR Alzheimer∗ (all fields); ‘general practitioner’ or ‘doctor’ or ‘primary care physician’ or ‘neurologist’ or ‘geriatrician’ or ‘psychogeriatrician’ or ‘memory clinic’ or ‘memory disorders clinic’ or ‘memory service’; diagnosis; 1 AND 2 AND 3.
Inclusion criteria:
Original, empirical data Quantitative, qualitative or mixed methods papers study that addresses the communication of a diagnosis of dementia and related attitudes and beliefs by health practitioners in primary care or specialist settings Paper in English language
Information extracted from included papers
Bibliographic details Aim Setting and study population; sampling criteria and recruitment method Participant numbers, demographics and response rates Questions asked of participants or outcome measures/instruments used relating to communicating diagnosis Data analysis methods Key results relating to communicating diagnosis
The quality of each paper was rated using the mixed methods appraisal tool (Pace et al., 2012). The mixed methods appraisal tool has been designed to be suitable for use in reviews that include qualitative, quantitative and mixed methods studies. There are separate criteria for rating each methodological design (i.e. qualitative (four criteria), quantitative randomized controlled trials (four criteria), quantitative non-randomised (four criteria), quantitative descriptive (four criteria) and mixed methods (four criteria)). Mixed methods studies are rated on qualitative, quantitative and mixed methods criteria. The number of criteria met by each study was divided by the number of applicable criteria (e.g. 3/4 or 7/11) and converted into a percentage.
We use the generic term practitioners or health practitioners to describe a mixture of professions (i.e. primary care physicians, specialists, nurses and allied health), primary care physicians to describe PCPs or general practitioners, and specialists to describe geriatricians, neurologists, psychiatrists, psychogeriatricians or neuropsychiatrists.
Analysis
A sequential explanatory mixed studies approach was undertaken (Pluye & Hong, 2014) (see Figure 1).
Studies were classified as quantitative or qualitative, or mixed methods. Quantitative papers and quantitative components of mixed methods papers were examined for: The proportion of practitioners who usually/routinely/always communicated a diagnosis of dementia, or the frequency by which the dementia diagnosis was communicated by practitioners. These data were combined, as both ultimately reflect the proportion of patients/families of practitioners in the study who would be told their dementia diagnosis. Frequency of different terms used Factors impacting on whether the diagnosis is communicated
A second reviewer checked extracted data from these studies. Quantitative results were summarized in tables and text. Comprehensive Meta Analysis software (https://www.meta-analysis.com/) was used to pool data on the proportion of practitioners who usually/routinely/always communicated the diagnosis of dementia to patients and families (Barendregt, Doi, Lee, Norman, & Vos, 2013). Random effects models were used, as we did not assume that the same effect size underpinned studies from different countries and professional backgrounds. Other quantitative data were not pooled, as there were heterogeneity in how questions were asked.
1. Informed by the quantitative findings in (2), and with a view of understanding factors impacting on practitioner behaviour, thematic analysis was undertaken of qualitative papers and qualitative components of mixed methods data (Thomas & Harden, 2008). Saturation was reached as later papers no longer yielded new themes. A second rater independently coded 10% of randomly selected papers, and themes and interpretations were discussed and consensus reached between the two raters. 2. Quantitative results were re-examined, presented and interpreted based on the qualitative themes.
Results
The search identified 7453 unique articles, of which 50 met inclusion criteria; an additional seven articles were identified through hand-searching. In total, 57 articles (53 unique studies) were included in this review (see Figure 1, Tables 1 and 2).
Quantitative data
Of 32 studies which provided quantitative data, 25 were descriptive only studies, two intervention studies (one of which was mixed methods) and there were six additional mixed methods descriptive studies (see Table 1). All mixed methods studies prioritized quantitative data in either nested or sequential designs; hence, mixed methods studies are presented with other quantitative papers. Results for four of these mixed methods studies were presented across two journal articles. For descriptive quantitative studies, mixed methods appraisal tool scores ranged between 0% and 100%, with an average of 61 ± 28. Weaknesses in the quantitative papers tended to relate to lack of sample representativeness and <60% response rates. Mixed methods studies tended to predominately focus on quantitative results, and had mixed methods appraisal tool scores ranging between 20% and 75% with an average of 47% ± 16. Weaknesses in the mixed methods papers tended to relate to more to qualitative components, and integration of quantitative and qualitative data.
Characteristics of descriptive quantitative, intervention and mixed methods studies.
AD: Alzheimer’s Disease; GP: general practitioner; PCP: primary care practitioner.
Characteristics of qualitative studies.
AD: Alzheimer’s Disease; GP: general practitioner; PCP: primary care practitioner.
A total of 13,242 practitioners were included in quantitative and mixed methods papers. Most studies attempted to recruit a representative sample of practitioners by inviting all or randomly selected eligible practitioners within a geographical area or within certain healthcare organisations to participate; a few used convenience sampling of practitioners attending dementia training (Downs, Cook, Rae, & Collins, 2000; McIntosh, Swanson, Power, & Rae, 1999; Vassilas & Donaldson, 1998), participating in intervention studies (Vassilas & Donaldson, 1998), or recruited from particular practices (Van Hout, Vernooij-Dassen, Jansen, & Stalman, 2006). Two studies used a combination of representative and convenience sampling (Cody, Beck, Shue, & Pope, 2002; Kaduszkiewicz, Bachmann, & Van Den Bussche, 2008), one study used a ‘market research’ sample, but how this was sourced was not clear (Jones, Mackell, Berthet, & Knox, 2010). Participation rates ranged from 15% to 100%. Most studies used self-completed written or online surveys, two used telephone interviews (Rubin, Glasser, & Werckle, 1987; Somme, Gautier, Pin, & Corvol, 2013).
Proportion of practitioners who communicated the diagnosis
Fourteen studies reported data on the proportion of health professionals communicating the diagnosis to the person with dementia (Figure 2). Random-effect pooled data indicate that 34.2% (95% CI: 22.7% to 47.9%) of GPs usually, regularly or always told persons with dementia the diagnosis. A greater proportion of specialists in the pooled analysis (48.3%, 95% CI: 37.5% to 59.1%) usually, regularly or always told the person with dementia the diagnosis.
Random effects pooled data on the proportion of practitioners (event rate) who usually, routinely always tell people with dementia their diagnosis.
Six studies reported data on the proportion of health professionals communicating a diagnosis of dementia to family Figure 3. Random-effect pooled data found that 88.7% (95% CI: 73.3% to 95.8%) of GPs and 96.5% (93.3% to 97.2%) of specialists usually, routinely or always communicated to family the diagnosis.
Random effects pooled data on the proportion of practitioners (event rate) who usually, routinely always tell family the dementia diagnosis.
There appeared to be no relationship between the year the study was conducted and the proportion of health professionals communicating a diagnosis. We could also discern no pattern between study country and likelihood of communicating the diagnosis.
The statistical associations between telling the diagnosis and demographic and other characteristics were examined in a few studies. Greater likelihood of telling the diagnosis was associated with the practitioner being male (Cody et al., 2002; Somme et al., 2013) and younger (Downs, Clibbens, Rae, Cook, & Woods, 2002; Somme et al., 2013; Tarek, Segers, & Van Nechel, 2009), or working in a practice with two or more practitioners (Van Hout et al., 2006). Two studies reported contradictory findings on how severity of dementia related to whether the diagnosis was told. One study reported that more severe cognitive impairment was related to greater likelihood of the diagnosis being told, as there was greater certainty that the diagnosis was correct, whereas another reported that persons with mild dementia were more likely to be told as they were more likely to understand the diagnosis (Rice & Warner, 1994; Van Hout et al., 2006).
Terms used when communicating a diagnosis
Some studies asked participants to write down or select from a list the terms they used in communicating a diagnosis of dementia. Table 3 presents the percentage of practitioners who reported using certain terms when communicating a diagnosis. Generally more practitioners appeared to use euphemistic terms rather than medical terms. One study suggested that specialists were more likely to use medical terms, and practitioners to use euphemisms (de Lepeleire, Buntinx, & Aertgeerts, 2004), and another two suggested that specialists used euphemistic terms more with persons with dementia and medical terms more with their family (Cantegreil-Kallen et al., 2005; Tarek, Segers, & Van Nechel, 2009).
Terms used in communicating a diagnosis from quantitative studies.
PWD: persons with dementia; GP: general practitioner; PCP: primary care practitioner.
Patient circumstances and other factors relating to whether diagnosis is communicated
Some studies asked doctors to select from checklists of beliefs/factors that contributed to whether they communicated a diagnosis (see Table 4). There was great variability between studies in the number of practitioners endorsing each factor. For example, 2% of French GPs (de Lepeleire et al., 2004) and 96% of Belgian specialists said that it was the patient’s right to know (Tarek et al., 2009). There were higher percentages of practitioners who endorsed barriers to communicating diagnosis, than those who endorsed facilitators for communicating diagnosis.
Patient circumstances and other factors impacting on whether a diagnosis of dementia is communicated from quantitative studies.
GP: general practitioner; PCP: primary care practitioner.
Patient insight and certainty of diagnosis seemed to increase the likelihood that the diagnosis was told for more than half of practitioners. Patient age and financial situation were considerations in the decision to communicate a diagnosis for less than a third of practitioners. For some patient circumstances, it was not clear whether the factor increased or decreased likelihood of telling the diagnosis.
Confidence in dementia diagnosis and treatment
Across studies higher proportions of practitioners endorsed statements that there were benefits to having and being told a diagnosis, than statements suggesting that there were limited benefits to a diagnosis (see Table 5). More than half of practitioners in some studies reported not being confident in aspects of dementia diagnosis, communication or management.
Practitioner’s beliefs and confidence regarding dementia diagnosis and treatment from quantitative studies.
AD: Alzheimer’s Disease; PWD: persons with dementia; GP: general practitioner; PCP: primary care practitioner.
Health and social care system factors
Only two studies reported items relating to health and social care system factors which may impact on whether a diagnosis of dementia is made and communicated. A study from Maine, USA found that 32% of primary care physicians reported that lack of reimbursement was a barrier to dementia management, and 41% reported that not having enough time was a barrier (Fortinsky, Zlateva, Delaney, & Kleppinger, 2010). A study of English and Welsh general practitioners found that 75% reported they had ready access to services and 50% found local services adequate or satisfactory (Renshaw, Scurfield, Cloke, & Orrell, 2001).
Intervention studies
We identified only one intervention study with the primary purpose of improving communication of dementia diagnosis in old age mental health teams. This randomised controlled trial (n = 644) had four arms that compared pen-and-paper exercises based on behaviour change theory, evidence-based information, or patient information to no intervention. The study found no impact of any of the interventions on practitioner’s intended behaviour in relation to finding out what the patient already knows or suspects, using the actual words ‘dementia’ or ‘Alzheimer’s disease’, or exploring what the diagnosis means to the patient (Eccles et al., 2009).
Another intervention study aimed to improve dementia diagnosis, treatment and care through three days of education for health professionals including physicians and nurses. The study did not quantitatively measure communication behaviour, but qualitative feedback suggested that education improved practitioners’ confidence in discussing dementia with families (Galvin, Meuser, & Morris, 2012).
Qualitative findings
The twenty-one studies that presented only qualitative data included 1494 health practitioners (see Table 2). One study that used the nominal group technique (where group members identify problems, brain storm solutions, then vote on these solutions) with participants attending dementia training had 990 participants (Iliffe, Manthorpe, & Eden, 2003). Results on the mixed methods appraisal tool ranged between 50% and 100%, with an average of 68% ± 18 on these qualitative-only studies. Weaknesses in the qualitative papers almost always related to not considering how study results relate to researchers’ influence and the study context.
In addition to qualitative-only papers, there were seven mixed methods papers (one which was an intervention study) included in thematic analyses.
Practitioners described diagnosis and communicating the diagnosis as intertwined processes. Having the patient agree to assessment often involved discussing possible diagnoses, as well as the patient acknowledging his or her symptoms. Cognitive testing could also help the patient and/or his or her family recognise the extent of cognitive difficulties. It was often not possible to separate out factors relating to the decision to diagnose, and the decision to communicate. ‘Sending them to a practitioner in dementia … the subtext is… we want to know if you’ve got dementia or not’ (GP, Phillips et al., 2012).
Whether to communicate a diagnosis of dementia
Figure 4 depicts an overview of themes that relate to a practitioner’s decision to diagnose dementia and communicate the diagnosis.
Factors that relate to on a practitioner’s decision to diagnose and communicate the diagnosis of dementia based on qualitative data.
The decision to diagnose and communicate the diagnosis of dementia is decided on a case-by-case basis and is influenced by the patient’s circumstance (level of severity, awareness of symptoms and family support and needs), practitioner’s characteristics (beliefs regarding dementia and treatment efficacy, confidence in diagnosis and communication), the health and social care system within which they function (access to specialists and diagnostic services, reimbursement for diagnosis/management, availability of dementia services) and cultural norms in relation to dementia (stigma in the community and common clinical practice).
The decision to diagnose is made on case-by-case basis
Practitioners seemed to decide on a case-by-case basis whether to diagnose and communicate about dementia for that patient at the point in time, rather than working according to best practice guidelines or clinical rules of thumb. They balanced the perceived benefits to the patient (and sometimes their family) with the perceived disadvantages at that point of time. What you’re presented with is not a patient with a particular score in the test, but a patient living a particular life in particular set of circumstances, with a particular range of family members and a particular range of expectations about what they would like to see in their healthcare management. (GP, Dhedhi, Swinglehurst, & Russell, 2014) The GPs took a contextual attitude towards the issue of diagnosing dementia. That is, they tended not to make general statements about how dementia is usually diagnosed or how it should be diagnosed; instead, they described the issue of diagnosis as closely related to the characteristics of patients, their overall health and social situation, and the availability of services. (Researcher, Hansen, Hughes, Routley, & Robinson, 2008)
Patient circumstances
Awareness and concern about symptoms
When patients approached practitioners with concerns about symptoms and seeking assessment, practitioners were more likely to investigate and share the results of assessments. For patients with concerns, being given diagnosis may reduce anxiety associated with uncertainty, and allow them to plan for the future. ‘They’re actually better knowing rather than living with this bewilderment about what is happening for them’ (Health Practitioner, Iliffe et al., 2003).
By contrast, patients who were not aware of their symptoms, or were not bothered by them were less likely to be diagnosed. Practitioners spoke about the difficulty in bringing up assessment when patients and/or families were in denial. When families approached practitioners with concerns when the patients themselves were not worried, practitioners had to balance the needs of families with the wishes and rights of the patients. Practitioners found it difficult to act against the patient’s wishes if they did not consent to assessment. the hardest thing is if … the person’s got obvious memory loss and they either, or their family, have chosen to significantly ignore it… Then trying to bring it up… it makes it harder. (GP, Phillips et al., 2012) I can’t go and steamroll your mother into taking a test that she will have enough insight to realize is a direct attack on her ability to keep coping. (GP, Hansen et al., 2008)
Severity of dementia and ability to understand the diagnosis
The patient’s stage of dementia and related ability to comprehend the diagnosis impacted on whether and how the diagnosis was made and communicated. However, views differed between studies on how practitioners behaved depending on the stage of dementia. For some practitioners, there was a greater imperative to diagnose and tell people with mild dementia, as they were able to comprehend the diagnosis, knowing may help them understand their symptoms and so they can be involved in decisions about therapy and future planning. Other practitioners were more reluctant to diagnose and tell the diagnosis to people with mild dementia because this would cause undue distress without benefits as the person would be unable to access services at that stage. For patients with mild dementia, there were mixed opinions as to whether to tell their family, as some thought it was the patient’s choice but others thought family should be told. …giving them a diagnosis helps to explain what their problems are and why they’re feeling maybe a lack of self-confidence in themselves and their abilities. (Specialist, Kissel & Carpenter, 2007) Despite all of the GPs in this study unequivocally claiming that an early diagnosis of dementia was important, several stated that they themselves were not proactive in the area and most were reluctant to diagnose early as they felt that a diagnosis of dementia was very difficult to give and had profound implications. (Researcher, Moore & Cahill, 2013) … professionals see little point in telling someone with advanced dementia their diagnosis. (Researcher, Keightley & Mitchell, 2004) Actually in this case it was not that difficult, because this lady’s insight ability is not high. So I knew she will not take this so bad. That is why I could explain it explicitly. Then again, I knew she didn’t absorb half of the things said. (Specialist, Karnieli-Miller et al., 2007)
Family
Practitioners considered the impact of the diagnosis on family – their ability to understand and access information about the diagnosis and support and services. Some practitioners saw their role as primarily for the patient, others for the family. Practitioners also described the dilemma of addressing the sometimes competing needs of both the person with dementia and the family. I think the thing that the diagnosis is really about is helping to prepare the family and the patients with that transition from when the patient isn't always able to care for themselves and the family isn't able to – and the transition to the family not being able to do it. (Primary Care Physician, Boise, Camicioli, Morgan, Rose, & Congleton, 1999)
Practitioner characteristics
Beliefs regarding dementia and treatment efficacy
Practitioners’ general beliefs about dementia, beliefs regarding treatment efficacy, and confidence in diagnosing and managing dementia appeared to influence their diagnostic behaviour. Some practitioners expressed negative attitudes towards dementia such as that it’s a ‘bad’ diagnosis or label, or that it results in loss of personhood – these attitudes were associated with a reluctance to diagnose dementia. Some practitioners talked about diagnoses of specific types of dementia being unnecessary. Beliefs of practitioners about the efficacy of treatment appeared to particularly influence their diagnostic practices – specifically practitioners in many studies were sceptical about the efficacy of available medications and did not consider ability to access these medications sufficient reason to make a diagnosis. GPs’ own innate attitudes and beliefs including fears may have resulted in their reluctance to get involved in diagnosis lest, if by becoming involved, they would be forced to confront the dilemma of either on the one hand having to convey bad news or on the other having to dissemble to protect both themselves, and their patients. Since neither situation was desirable, by not being proactive these GPs could avoid confronting this dilemma. (Researcher, Moore & Cahill, 2013) Since we don't have any really good medications, you say, “Is this a particular kind of dementia, multi-infarct versus Alzheimer's?”… I'm not convinced we can do a whole lot for those people. (Primary care physician, Boise et al., 1999)
Confidence in diagnosis, communication and management
Practitioners talked about difficulties in diagnosing and managing dementia. They were hesitant to tell someone they had dementia when they were not confident in the diagnosis and feared giving an incorrect diagnosis because of the impact on the patient and family and doctor–patient relationships. Practitioners were sometimes reluctant to make predictions about prognosis. Practitioners were also uncertain about the best way to communicate the diagnosis, and an observational study described practitioners’ uneasy behaviour when giving the news. Some practitioners described being demoralized by the difficulty of diagnosing and managing dementia. Physicians in our study were reluctant to label patients as having the “disease” of dementia if they were uncertain about the diagnosis. (Researcher, Pimlott et al., 2009) … practitioners felt inadequately trained for the task of early diagnosis, and that the diagnosis was difficult to accept for professionals as well as patients – “we know the implications of the disease process.” (Researcher, Iliffe et al., 2003)
The health and social care system
Access to specialists and diagnostic services
Practitioners in some studies described difficulty accessing specialists and diagnostic services such as memory clinics or neuroimaging as hindering or delaying diagnosis. This was particularly an issue in rural samples. ‘During the diagnostic process, many referred patients to specialists for consultation, but this was sometimes difficult because of scheduling delays or distances some patients had to travel to reach consultants’ (Researcher, Teel, 2004).
Reimbursement for diagnosis and management
Practitioners in many studies discussed how people with dementia took longer to care for, and that standard consultations did not provide enough time to adequately detect, diagnose or manage dementia. Related to this was the issue of insufficient reimbursement for the care of people with dementia – some practitioners mentioned case management rather than assessment as being particularly underfunded. Practitioners also discussed bureaucratic barriers relating to paperwork relating to dementia care and, in some locations, in order to access anti-cholinergic medications. When asked to describe a substantial barrier to care, physicians simply said, “Time, time, time”. (Researcher, Pimlott et al., 2009) Dementia created heavier paperwork demands owing to frequent need for community, social service, and specialty referrals. Physicians related that caring for persons with dementia is more time intensive for several additional reasons. Because people with dementia have impaired recent (i.e. short-term) memory, family members or other informants are often used as a primary source of history and to assist in decision making and negotiation of treatment plans. Family involvement in the clinical visit was viewed as important but time consuming. (Researcher, Hinton et al., 2007)
Availability of services
Many studies reported access to services as a reason to diagnose dementia. However, practitioners from almost all studies discussed the inadequacy of services for people with dementia. Practitioners’ perceptions of lack of or poor services meant they were less likely to diagnose dementia and communicate that diagnosis. …. GPs interviewed indicated that the social services available were insufficient, inadequate, and complex, and that patients’ families felt powerless, isolated, and in distress. (Researcher, Lahjibi-Paulet et al., 2012) Almost all complained about the extremely limited services—such as community based nursing care, day-care, or respite—that were available to support care in the home. Although most communities had some form of long-term care available, only one had a dedicated dementia-care unit. (Researcher, Teel, 2004)
Cultural norms in relation to dementia
Stigma in the community
Stigma around dementia made practitioner’s more reluctant to initiate, diagnose and communicate the diagnosis because of concerns about the implications of having a label of dementia, including implications for the family. Associated with this idea of stigma is that the label ‘dementia’ evokes the image of someone with later stage dementia with significant impairment and high dependency. Practitioners were concerned about the impact of the diagnosis on the person with dementia’s self-concept. They were worried that people with labels of dementia may be treated negatively by others within society. Practitioners in a few studies were also concerned that people with dementia are discriminated against within the health and social care system. To a mildly demented person, “Alzheimer’s” means “people sitting in a chair in the nursing home, being fed”, and that’s the only image that that word is going to have. And so, for that person, that word would be devastating. (Specialist, Kissel & Carpenter, 2007) GPs highlighted their awareness of devaluation through their perception of people with dementia not being particularly valued by society and not being considered valuable partners for social interaction… They recounted how the devaluation of people with dementia might take the form of derision, including gestures such as rolling the eyes and tapping the head. (Researcher, Gove, Downs, Vernooij-Dassen, & Small, 2016)
The label can produce emotional distress
Related to the notion of societal stigma was that of the self-stigma and emotional distress that being given a label of dementia may produce. Practitioners in many studies were concerned about the impact of the diagnosis on the patient’s psychological health. Interestingly, this concept was discussed broadly rather than in relation to individual patient circumstances (i.e. identifying characteristics of patients who may be at greater risk of distress). Practitioners thought that the diagnosis may cause loss of hope, anxiety and depression and could even lead to suicide. I’m very, very careful about um, destroying positive outlooks on life with the diagnostic label. (GP, Dhedhi et al., 2014) For patients, disclosing the diagnosis could be destructive, creating anxiety and provoking a depressive reaction to the “bleak outlook”. (Health Professional, Iliffe et al., 2003)
Common clinical practice
Practitioners in a few studies referred to common clinical practices with regard to dementia as these aligned or contrasted with their individual practices. For instance, they talked about how they interpreted guidelines on timely diagnosis of dementia within a ‘best interests of patient’ approach, discussed their medical training to only diagnose treatable conditions and talked about dementia in the context of resisting the medicalisation of ageing. In one study, participants justified their own behaviour by describing a service culture of non-disclosure. Actually informing clients that they have dementia has never really been part of the culture … certainly you don’t routinely tell people they have dementia. (Keightley & Mitchell, 2004) Dementia is one of those things—you tend to only look for the things that you can treat easily. (Boise et al., 1999)
Communicating the diagnosis of dementia
Who should give the diagnosis of dementia?
Some practitioners avoided having to give the diagnosis of dementia by referring to specialists, memory clinics or other services (such as aged care assessment teams in Australia). Other generalists felt strongly that it is their responsibility to give the diagnosis. In one study, practitioners suggested that a family member could sometimes be the most appropriate person to give the person with dementia the news. I send them to a specialist on purpose. Announcing the diagnosis is precisely the moment when the presence of several people is necessary. It’s too violent for one person to tell another. I think it’s a good idea. (GP, Lahjibi-Paulet et al., 2012) I think it would be a horrible thing to be told by a specialist or a third party that you’ve never met or seen before. It would be far better for that information to have been given to a carer, fine—but, if the information is going to be given to the patient, you’d want it to be someone that knows the patient I think. (GP, Phillips et al., 2012)
Approaches to communicating the diagnosis
Practitioners described a range of approaches in communicating the diagnosis of dementia. What they said and the amount of information they conveyed depended on what they thought the person was ready to hear, and being sensitive to the needs of their patient and family. They described softening the diagnosis (by using terms such as ‘maybe’, euphemisms, and normalizing the symptoms), putting a positive spin or frame on information (such as by focusing the discussion on treatments and services), or having a formal spiel which normalizes the symptoms. We do not lie regarding the clinical findings; we just try to veil them. (Specialist, Karnieli-Miller et al., 2007) … so I’ll kind of soft touch the diagnosis … and focus more on their memory rather than saying you’ve got Alzheimer’s. (Primary care physician, Connell et al., 2004)
Terms used when communicating the diagnosis
Some practitioners advocated using correct medical terms when communicating the diagnosis. However, practitioners in many studies disliked the term Alzheimer’s, some preferring to use the term dementia. ‘I may not say “Alzheimer’s disease”, but I’ll say “dementia”. And I’ll fully explain what I mean by that, so that I’m giving the correct definition of what Alzheimer’s disease is, but I may call it dementia’ (Specialist, Kissel & Carpenter, 2007).
Practitioners used euphemisms most commonly describing problems with memory (e.g. memory problems, memory loss’ or the brain (brain ageing, brain shrinking, loss of brain cells) rather than naming the disease. Some considered having described the symptoms and offered treatments sufficient in terms of giving the patient the diagnosis. I say “you have a disease of the blood vessels in the brain, and that is why you have these problems” or “you have a problem of metabolism … and that is why you have trouble remembering”. I tell them all of the deficiencies they have …; …I don’t say “yes, it is definitely Alzheimer’s”. I believe that I give them a full disclosure without using the words they fear most. (Specialist, Karnieli-Miller et al., 2007) I don’t think I ever used the term dementia with her…I wouldn’t say that I didn’t give her a diagnosis, but I didn’t give her a label. It’s not the term in itself, it’s what does it mean to this patient? (GP, Dhedhi et al., 2014)
Who is told the diagnosis of dementia?
Some practitioners preferred to tell the person with dementia and the family the diagnosis together. A few stated that for people with early dementia, they preferred to tell the patient first and let them decide when and how to tell their family. However, practitioners in many studies gave more information about the diagnosis to family than the person with dementia. With family, practitioners were more likely to use the terms dementia or Alzheimer’s disease, talk about prognosis, and management, and planning ahead. I use the term Alzheimer’s a lot more with family members and not with the patient. (Primary care Physician, Connell et al., 2004) GPs were more likely to disclose the diagnosis, use medical terms and discuss the likely progression with the family carers than with the person himself or herself when discussing the illness. (Researcher, Downs et al., 2002)
Discussion
Pooled analysis found that 34% of GPs and 48% of specialists usually/routinely tell persons with dementia their diagnosis, and 89% of GPs and 97% specialists usually/routinely tell families the diagnosis. This means that over half of persons with a diagnosis of dementia are not told their diagnosis. Euphemistic terms such as ‘memory problems’ are more often used to describe dementia than medical terms, particularly with people with dementia. Practitioners’ decision to diagnose and tell the diagnosis of dementia are influenced by their own beliefs regarding dementia, and their confidence in diagnosis and communication, the awareness and circumstances of the patient, and medical practice and societal norms and the health and care social system in which they practice.
Who should be giving the diagnosis of dementia? This review found that some general practitioners favoured giving the diagnosis themselves and others favoured specialists giving the diagnosis. These data suggest that specialists are more likely to communicate the diagnosis, and use medical terminology, this may be because specialists may be more likely to see patients with awareness of their symptoms seeking help. Australian clinical guidelines recommend that the diagnosis of dementia is made by specialists (Clinical Adaptation Committee, 2016) and the UK national dementia plan suggests that primary care should refer those with worrisome symptoms to get a diagnosis (Department of Health UK, 2013). More discussion is needed about how primary care practitioners and specialists work together (possibly in a shared care model) in diagnosing and managing dementia. Even if specialists make the diagnosis, general practitioners still have a critical role in recognising possible dementia cases and making referrals, which necessitates being able to have conversations about the possibility of the diagnosis of dementia.
The behaviour of practitioners may have unintended negative consequences on patients and family. Secrecy, practitioners’ lack of confidence with regard to treatment benefits, and directing of information towards family may exacerbate self-stigma, and feelings of loss of control and hopelessness in persons with dementia (Low et al., 2017; Read, Toye, & Wynaden, 2016).
Stigma in the community and attitudes of practitioners affected if, and how, the diagnosis was communicated. Practitioners were more likely to tell the diagnosis to those who wanted to know and were concerned about the distress that persons with dementia may experience when given the diagnosis, and that they may be discriminated against by society or the healthcare system. Public campaigns to decrease stigma in relation to mental illness result in increases in help-seeking (Henderson, Evans-Lacko, & Thornicroft, 2013) and improvement of attitudes (Gronholm, Henderson, Deb, & Thornicroft, 2017) and such campaigns may be needed for dementia. Patients are also increasingly seeking out medical information on the internet (McMullan, 2006). Increased knowledge and decreased stigma may empower consumers to demand dementia investigation, diagnosis and treatment.
We identified only one intervention study with the primary aim of improving communication of dementia and this was unsuccessful in changing practice (Eccles et al., 2009), this shows that more intervention research is needed. Changing practitioner behaviour with regard to dementia diagnosis and management is challenging. For instance, the UK government’s efforts to increase timely diagnosis of dementia through practitioner education, financial incentives for diagnosis and management and introduction of specialist diagnosis services (memory clinics) showed no effect on incidence of dementia over 14 years (Iliffe & Wilcock, 2017).
One step in designing complex interventions is to identify and address barriers to behaviour change (French et al., 2012). The individual and structural barriers identified in this review could be addressed through a multicomponent approach including:
Development of guidelines on how to communicate a diagnosis of dementia. Such guidelines have been developed for cancer (National Breast Cancer Centre, 2012; Rodin et al., 2009) Training to improve practitioner skills and confidence in diagnosis and communication of the dementia. Training on making a diagnosis of dementia should be accompanied by training on the need to communicate the diagnosis to the patient as well as their family, and how to appropriately convey the information (e.g. as a series of discussions). The communication of diagnosis component could be informed by successful programmes to improve cancer communication (Baile et al., 2000; Pham, Bauer, & Balan, 2014). Social marketing campaign to address stigma in the community, particularly targeting older people Provision of therapeutic services for mild dementia could add weight to early diagnosis being a beneficent action and allow practitioners to act on the diagnosis and offer hope. Cognitive stimulation therapy is one such treatment (Bahar-Fuchs, Clare, & Woods, 2013); however, research is needed to further demonstrate the efficacy of treatments such as cognitive rehabilitation, speech pathology, acquired brain injury style rehabilitation and occupational therapy for mild dementia. Reducing structural barriers such as ensuring that practitioners can be sufficiently reimbursed for time spent managing dementia. Another strategy may be involving practice nurses in the dementia diagnosis and management so that persons with dementia and families get the time they need within the financial reimbursements available. Ensuring that specialist dementia diagnosis services are accessible in all geographical areas, rural areas could be serviced through telehealth which has been shown to provide valid diagnosis (Martin-Khan et al., 2012) A dementia registry may encourage diagnosis by tracking performance against standards (Religa et al., 2015)
A caveat in designing an intervention is that this review only takes into account the viewpoints of health practitioners; the viewpoints of persons with dementia and their carers also need to be considered (e.g. Low et al., 2017). People with dementia and their carers should be part of the design team for interventions on communicating a dementia diagnosis.
This review was limited by the characteristics and methodologies of included studies and methodologies. Making and communicating a diagnosis were treated in quantitative studies as two distinct consecutive procedures. However, our qualitative study suggests that practitioners often view these as intertwined processes. Not all quantitative papers asked about factors of interest in this review, and the diversity of methodology meant that not all data could be pooled. We do not know whether the broad range in responses were because of true differences between samples, differences in methodology in the way the question was worded or a combination of the two. In addition, some quantitative papers did not specify in the question to whom the diagnosis of dementia was told. When not specified, we assumed that the response referred to persons with dementia; however, this could have been interpreted by practitioners as having told either the patient or family. Longitudinal qualitative studies combining observation of clinical conversations and interviews with practitioners, patients and family (Karnieli-Miller, Werner, Aharon-Peretz, Sinoff, & Eidelman, 2012; Karnieli-Miller, Werner, Neufeld-Kroszynski, & Eidelman, 2012) may aid further understanding of how the diagnosis of dementia is communicated and the impact of different communication styles on the experiences of people with dementia and their families.
The majority of studies came from developed nations. The rate of dementia communication may be lower in developing countries, where practitioners may have a more paternalistic stance, and where patient autonomy are not as strongly emphasized (Matusitz & Spear, 2015).
Data extraction and interpretation were subject to our own experiences and assumptions as researchers interested in the process and barriers to communicating a diagnosis of dementia. We attempted to be objective, and our authorship team came with multiple viewpoints including a member who is a specialist in diagnosis (HB), who has received a diagnosis (KS), who is familiar (LFL) and less familiar (MM) with the diagnostic and support processes.
One strength of the paper is the sequential mixed methods systematic review approach which allowed us to describe practitioner behaviour using quantitative data, as well as try to understand the influences on this behaviour using qualitative data. This enabled production of results that are generalisable yet offer a nuanced understanding of how and why the dementia diagnosis is communicated.
Conclusion
It is a worldwide problem that most people with dementia are not explicitly told their diagnosis. This could be considered unethical practice and a breach of human rights. Without a diagnosis, people are being denied their right to information about their condition and prognosis, to drug treatments and non-pharmacological interventions which may promote their quality of life and to participate in discussions and express their wishes for the future through wills and advance care directives while still able.
It has been over 20 years since the first paper included in this review was published, and there appeared to be little change in whether and how a diagnosis dementia is communicated across this time. This is despite greater awareness of dementia in the community because of media and health policy focus, increased accessibility of information on dementia on the internet, and research advances in neuroimaging and diagnosis (Gauthier, Leuzy, Racine, & Rosa-Neto, 2013). Well-designed multicomponent intervention programmes are required to improve how a diagnosis of dementia is communicated; these may also contribute to initiatives to improve timely diagnosis of dementia.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.